The change in one family's perspective one moment at a time.

When Declan was 18 months old, he was diagnosed with epilepsy. At three, and then at six, he underwent brain surgery in order to stop the seizures. Now seizure-free, his journey has been a remarkable one. Through my perspective as a mother, teacher, and inclusion consultant to schools, I will share moments when, as we worked to teach our son, he taught us.

The name "Awesome Guy" comes from one of those moments. To read about it, click here.

05/16/2012

On the way home from work I called my mother. "Just a head's up," she said, "you know how we switched Declan from the swim clinic with the younger kids on Tuesdays to one with the older kids on Mondays? Well, when Declan started to get dressed after his lesson, Lyes called over to me."

Lyes became Declan's swim teacher when Declan was nine. I remember the day I called Children of the Sound, a local swim school, to find someone who might be able to work with Declan. "It needs to be with someone who gets it," I explained, "someone who can understand how Declan learns, and understand what is hard for him." "We'll have him swim with Lyes," the voice on the phone determined. "He owns the company and is very good at working with all kinds of kids." When Lyes called me to talk about Declan, I remember going into a long explanation. "He can swim but he doesn't know the strokes. He has poor working memory, has difficulty holding understanding verbal direction, tends to not read social cues well, and often swims with just one side of his body as a result of the neurosurgeries that he had on the left side of his brain (literally, Declan would go across the pool with just his right arm swinging out of the water)...." After my lengthy diatribe, I remember the pause on the other end of the phone, then Lyes' response. "So he's a boy," he said. Somehow I knew that this match just might be a good one.

"He asked me where Declan was going, why he wasn't staying for clinic," my mom relayed. "When I reminded him about switching to the older clinic, he said, 'No. I want this kid swimming. I want him to swim both clinics. I want him swimming every day. I want his parents to move to another house with a pool and I want him to swim even more.'" Before my mother could respond, she heard Lyes call Declan over. "Dec," he demanded, "come over here. What do they call you, Dec?" Yes, Declan replied, puzzled by the question. "Well now you're DAC. You see, DAC stands for Declan Assistant Coach. From now on, you are my assistant coach for the younger clinic." Lyes has fallen for Declan, and we him. He will do anything, it seems, for our son. This year, he even came to see Declan recite his one and only line in the school play.

When I got home that evening, I asked Declan about it. "Dec!" I exclaimed, "I hear that you are going to be an assistant coach!" "Yeah," he responded with the kind of hubris that made me think he might just blow on his knuckles and rub them against his chest, "it's true." I stayed quiet and just watched his reaction to this latest, exciting development. "I think," he continued, walking across the room to look out the window, "this might actually help me become a doctor one day."

04/22/2012

He strolls up our walk whistling a tune and grabs the handle of one of the many glass doors along the front of our house. As he enters, he tosses off his shoes and flashes a smile. "Hi Jenny. Is Declan home?" "Sure Jasper," I answer, "you know where to find him." He hops up the small set of stairs in our living area and turns the corner to the room where Declan is sitting at the computer researching American Idol. Declan spends as much time as we allow watching youtube videos of American Idol auditions and performances from every season. He is an expert. His fascination, no, his obsession with American Idol is bittersweet. If you ask him, he will tell you the top three winners of every season, one through ten, first name and last. If you ask, he will tell you the song they sang for their auditions, for Hollywood week, and during the season if they made it. This reality TV is very real for him. If we allow him to, he will go on about American Idol, asking us questions about who we think will win, who we think will be in this week's bottom three, and will listen carefully to our responses, tracking any signs of how his favorites will fare. While we marvel at the remarkable gymnastics of his memory, we cringe at the perseverative behavior. We love how happy it makes him, but fear what he misses as he ponders this week's results show.

In comes Jasper, best friend, son of my friend, boy therapist. Jasper is the epitome of boy. Day old shorts, Red Sox t-shirt, socks scruched down to his scruffy sneakers, tossled just-out-of-bed hair, and chock full of curiosity and adventure. Every time he walks through our door he reminds me of one of the boys from the movie Stand By Me. He is almost always emersed in one project or another, ready to take his pal Dec along if he'll come. He knows that sometimes he will not succeed, but he nevers stops trying. He knows that his friend will sometimes not have the background knowledge, but he doesn't care. He knows that his friend may lose interest or resist certain activities, but he persists. And often, he makes things happen. He makes Declan inch toward what makes a boy a boy; he urges play with Legos, making cardboard swords and shields, flying paper airplanes, and talk about girls (even though he does not quite understand them nor particularly craves their company). Today, he is taking Declan for a walk through the wetlands in our backyard. In his backpack, he has a flashlight, a compass, a swiss army knife, a box of matches, and a copy of A Boys Guide to Adventure. "Come on Dec," he calls as he re-enters the room I am in and goes to put his shoes back on. I am always surprised to see Declan emerge right behind him, searching for his own shoes (usually a pair of new crocs, ready to be lost or broken at any moment). He secures his backpack and off they go into the woods. We have been living here surrounded by trees for more than four years, yet it has never occurred or appealed to Declan to enter them. But there they go into the woods with everything they will need for survival. "Jasper," I call them back. "Yeah?" he says. "Pass over the matches dude." "Awww, " he says. "Yup," I say, "I will keep them safe right here on my counter for when you return. "Ok, but you'll be sorry if we get stuck and need them to stay alive." "Thanks, but I'll take my chances."

When they return, they are covered in dirt head to toe and laughing their heads off. "Mom!" screams Declan. "We were playing in the giant dirt pile where they're building the new house. Jasper pretended to push me off and by accident, I actually fell!" As he says this, I peek outside the back window at the monstrous size of the pile they are referring to and I try not to reveal the fear that racks my insides. "Then Jasper caught my leg." "Yeah," reports Jasper, "and I thought this is not good. He's not going to be happy. I was holding on so tight to his foot and I was trying to pull him back up." Little whimpers sneak out of me, disguised as supportive laughs. "But then I looked down and I saw that Declan's shoulders were shaking and I knew everything was going to be okay!" "What?" I finally betrayed some of the reservation and fear I was feeling. Shaking? Was he having a seizure? Was he hurt? Was he okay? "Yeah! His shoulders were shaking so I knew he was laughing!" Declan is standing next to him still laughing. He is thrilled with himself and his adventure with Jasper. My shackles drop and I remind myself again (again!) to trust experiences like these, allow for the danger, let go of some of the reins to his friend, who apparently is the only one who can teach Declan what it means to be a kid.

As they track mud and dirt to the downstairs bathroom, as they walk out to the hose with a bar of Dove soap in their impossibly soiled hands, I think of the blatent metaphor that is throwing rocks at my me. Jasper pushed him, over edge even, but he survived. And not only did he survive, but like with every great therapist he has ever had, he blazed new, beautiful neurons from it. Every boy like Declan needs a Jasper.

12/12/2011

The phone rings and I can see before I reach for it that the call is coming from Declan's school. Perhaps it is the school secretary calling to give us a date for the next parent meeting. The next meeting we have is going to be a big one; we will have a lot of work to do to plan for a smooth transition to middle school.

Middle school. The thought of it makes me break out in hives. Of course, I am conjuring my own, awkward memories of middle school, but I am also drawing from Tova's days in that bastion of hormones, pimples, and social jockeying. As soon as she was finished and entered high school, she seemed to have shed a burden like phoenix rising from the ashes. The difference was palpable, as if she was free to be who she is and always was before the pressures of middle school sent her into hiding. How, I think, will I get Declan through unscathed?

I pick up the phone and it is Sandra, the school nurse. We are friends by way of a mutual friend, but also because we communicate so often about Declan. He tends to use her office as a sanctuary; a place to go when things get too overwhelming. Recently, he has also been reporting to her when he has unusual sensations in his head. We are not certain if the short, unusual episodes he is having has anything to do with seizures, but we honor them to be certain for his next trip to the doctor.

"Hi Jen," she says casually. "I have Declan with me and he is having that feeling again."

"What is he saying?"

"He says that they're having a party in his head." He is referring to perhaps intermittant flashing, sounds, or twinges, as if there really was a party going on. Other times, when the sensations move from one part of his head to another, he says that they are "playing tag" up there. His choice of words gives us a better understanding of what it must be like.

"Did he say anything else about it?" I asked

"Well," Sandra said, "I asked him if he could be more descriptive about the party, and after some thought, he said it could be a sweet sixteen."

We laugh at statements like these. In fact, I ask Sandra if we had ruled out anniversaries and bar mitzvahs. It is the ernestness with which he shares his very literal answers that make communicating with him so fascinating and charming. His intentions are pure and his trust is without any reserve. But I am conflicted. I know that middle school is rapidly approaching, and despite our best efforts to prepare him, these beautiful moments may well be the same ones that eventually hurt him.

09/07/2010

I am driving home from the first of two full day teacher workshops that I will run this week in late August. Three days ago I was on the beach in Wellfleet, Massachussetts listening to the water crashing, feeling the sun on my skin, smelling the ocean air and a welcome blend of sunblock fragrances. Now, I play the classical channel on XM to keep myself from completely losing it to the anxiety and disorientation that I feel. Making the shift from summer to fall is hard for everyone; I too cannot seem to shift my body and mind fast enough to engage in the way I know I am usually capable. My mother, who referring to this phenomenon meant to say "re-entry," once mistakenly said, "rear-entry." I think the latter term decribes the feeling best.

I pull into our driveway and park. I glance back at the bags I took with me to work and think better of taking them out right now. I leave the car and gear behind me and walk into our house. Tova and her friend Emma are at the computer looking at itunes and playing music. Declan is at the large white wipe-off board that sits on the clumsy wooden easel we bought at IKEA. Nothing unusual here. I go upstairs to change, still thinking about the board. I got my money's worth from that purchase. I remember buying it at Staples a few years ago, and though I bought it with the intention of working with Declan on it, I never dreamed of what an incredible tool it would actually become. I often scan the aisles of office and educational supply stores looking for unique possibilities for teaching Declan something new. It's impressive what one can do with a set of library book envelopes! But the board has become an institution in our household. Since it's arrival, it has played many roles, but mostly, it has become a sounding board for Declan. It is here where we get glimpses into what he is thinking, much more than we would ever hear from asking. He approaches the board many times throughout the day and just puts his thoughts down. One time, he used it to express his fear of a character on SpongeBob, which triggered a conversation about what is real and what is fantasy. Another time, Declan used it to create a multiple choice quiz for the rest of the family on how to handle different social situations. It was clear that time, that he was working through his own new learnings.

As I change into my comfortable summer shorts, I realize something. The board is really a place where he can make his thoughts visually accessible to him. Declan struggles with processing language and information, and the board gives him yet another way to work though new, difficult concepts. Further, he gets to do it at his own pace, and can erase whatever he likes in an instant. He is in control. I walk downstairs, now eager to see what deducing he has left behind for us this time. What I see is a list of what he has done and needs to do for the rest of the day, each job descibed in delightfully simple terms. Eat breakfast, go to school, come home. It looks so doable, yet school and days filled with to-do's are so difficult for him. But there it is, laid out in a list just like he learned from his favorite characters Frog and Toad. The tao of Frog and Toad, I think to myself. I smiled and let my shoulders drop to where they should be, as I often do when I learn something new from my son.

08/12/2010

"Um," he says approaching me gingerly in the kitchen. I continue loading the dishwasher, waiting to hear what is clearly a matter of importance. "I was wondering..." He is so predictably unpredictable these days that I have no idea what this is about, but I have an inkling that it might be one of those moments. "Yes," I respond, continuing with my task. "Just listen for a minute," he says, anticipating some resistance, "before you say no. Okay?" "Okay," I say, feeling like I am giving away a right I may well need to exercise in the near future. I rise up from the dishes and give him my full attention. "You know how Anna is sleeping over tonight and the girls are going to sleep in the guest room? I thought it would be a good idea if I got to sleep in there with them tonight." I go to respond but stop, remembering how I promised to listen. This is going to be a hard one I think. He wants so badly to be able to "play" with Tova and her friends, but does not quite appreciate the needs of an older, teenage sister. To him, inviting her to play with he and his friends is absolutely equal to the reverse. But clearly, it is not. The necessity of talk, manicures...it just requires a kind of privacy he will have a hard time comprehending and one that I feel the need to respect. "I get it, Dec," I say, but already my tone has given him a clue to my response. "Mom" he states firmly. "Yes," I echo firmly. "Just don't get me started." There's the smile. There's one in practically every exchange. It's the moment when he says something that throws me. It can be a word, a phrase. A try, a misnomer, but nonetheless a beautiful attempt, with no fear of failure I might add, at new language. "Just don't get me started," he repeats for emphasis. He's heard it repeated like that somewhere before, I think, and he's seeing if it will get him the floor again. I give him the floor. "I could make a bed on the floor and I could sleep in there with them. I think that will work. I'm serious." No mistaking how serious this boy is. "Dec, the bed is so small and the girls need their privacy," I say, not enjoying the answer I need to give him. I'm a sucker for not wanting anyone to feel left out. "How about if I ask them," I say, "but only if you think you can hear the answer 'no' if that is what their answer is." "I know. It's just when I feel so angry...when I feel the grrrr...," his face is in a snarl and his fists are pumping downward toward the floor, "I will stop myself. Like this: gr..." And he stopped himself. I'm watching him. He is performing the late night entertainment and doesn't know it. "Okay, I'll ask," I agree. Then he throws out the punchline. "Yeah. I think you should ask them. It's just that I'm really getting tired of risking my life up there every night."

06/14/2010

It has been a long time since I've last posted. As it tends to do from time to time, life gets in the way. I have been working more and writing less, and like trying to get back into the routine of going to the gym (it's the best once you start, but getting yourself there is a monumental task), I have admittedly been avoiding the keyboard. But in one very short and sweet moment, my beautiful, soulful daughter reminded me of the remarkable power of words, and I felt immediately compelled and inspired to write again.

It was the memoir that Tova had silently been working on for her LA class over the last several weeks. A few days ago, I came home and found it resting on the keyboard of my computer. I went out to the back porch to find my husband Brendan sitting on the couch. He saw what I had in my hand and nodded to me as I sat down in the wicker rocker. "I dare you," he said, "to read it without crying."

I am so grateful that Tova chose to share this moment in time with us. I know that she did not write it for us, but because she wrote it, we are able to catch a tiny glimpse of what it must have been like for her. For years I agonized over trying to make sure she was okay during all of this, and having this window into the mind of her younger self is a blessing. After I read it, she said, "You see mom, I had no clue. I was content just going about my business as usual."

Tova bravely agreed to allow me to post it on the blog, so here it is:

Caged

by Tova Byrne

Hesitantly, I sidled indoors, ushered like a sheep by my grandparents. The place struck me as unfamiliar; everything (and everyone for that matter) was too quiet and fragile. The entire structure seemed to be made out of marble, glass, and stainless steel, and I wrung my tiny six-year-old hands together, as if anything I touched would suddenly shatter.

"C'mon sweetheart, we're going to see Declan and your parents now," explained my grandmother as she led me around the gradual corner. Mommy? Daddy? I wondered. I hadn't seen them in nearly a month, but we conversed daily over the phone. In the meantime, however, I stayed oblivious and highly enjoyed being passed around by relatives I scarcely saw.

The elevator rang, and Nana held my hand as half the people poured out, like they were water and not humans. They dispersed slowly, leaving the mouth of the stream wide open for the taking, and we stepped in. Many followed, such as people in suits and uniforms, and even a lady in a wheelchair. The doors pulled closed slowly, with what looked like much effortm, and we gave a small lurch upwards.

People shifted uncomfortably, and the whole ride consisted of orchestrated coughs, sniffs, and scratches. Nobody talked. As we rode, the tide of the elevator thinned, only to be thickened again by oncoming others. I stared in awe at the lady sitting so calmly in her wheelchair, not knowing any better. I wondered why she always sat when it proved so much fun to stand and run and jump. The elevator stopped before I got a chance to finish the thought.

I was guided out again, but not directly. Being on the elevator for so long, we had been eventually pushed to the back and so we created a path to get out. I did this excitedly, for it reminded me of RushHour, my absolute favorite game at the time.

The elevator door shut behind us, and we rambled on. Funny-looking doctors passed, sporting shiny, puffy hats that made them resemble blueberry muffins from space, and they wore similar objects on their feet that went, SHHHH, SHHHHH, with every step they took. With the exception of the sound of doctors sliding around, silence positively brewed within the building. We passed gurneys and lots of closed doors, (which, for the record, I didn't like. I was an incredibly curious six-year-old, and all secrets had to be known.)

We finally added our silent and uncomfortable march in front of two gigantic white doors, with little webbed windows too high to peer through. The intercom crackled, and Nana said the magic password, (which included her name and Declan's) and the doors opened magically. I stumbled forward, reminded of Scooby Doo when they shuffled into a haunted house and the door swung wide, but nobody stood behind. Forgetting the haunted house reference, I entered the wing the most at ease since I arrived. There was more sound here, kind of a general murmur, and the walls acted as a sense of relief as well. A mural of a jungle stretched out, if jungles really contained smiling giraffes and exotic butterflies. I stood on tippy-toes and pressed a minute, marker-stained finger against an ornate orange wing, and moved on with a quiet sense of satisfaction.

We eventually found the right room, and we filed in quietly. I wasn't fully sure why we were in the hospital until now, when I spotted him in the massive, sterile crib. He sat like a caged animal, a four-year-old on display at the zoo.

He positively radiated with exhaustion, which confused me some, regarding he was spending most of his time in bed. He seemed too fragile, and I made my way over to my mom, who sat next to the crib. I gave her a hug, and she too slumped with fatigue, but I understood this time. It wasn't fun to sleep in a chair.

"Hi Dec," I ventured, curling fingers around the glacial, rigid metal bars surrounding his bed. It felt good to be able to actually touch something, although the whole setup was very unwelcoming.

"Hullo Tofa." He smiled at me and I gladly returned the favor. He looked very odd, a little boy with a hat that made him look like he had an onion for a head. Lots of wires sprouted out the top, which really didn't help the fact that I currently saw him as an onion. The wires drooped down his back into a backpack, and I remember wondering why he was electricity-powered. No wonder he looked as if he were in the zoo.

We stared at each other for a moment or two, simply basking in each other's presence. After which, I decided my little brother needed to laugh. It became my mission, yet the forlorn boy laughed far too easily. I couldn't blame him. I didn't exactly adore the hospital, either.

Even after informed that these visits would repeat biannually, it took me quite a while to comprehend that this wasn't normal. I mean, I didn't visit the hospital for such a span of time when I was four. Declan stood by himself, different. I didn't care. He was my little brother and I was going to love him anyway.

04/25/2010

This vacation we braved Great Wolf Lodge and its enormous indoor water park. Have you ever been there? Think airplane hangar filled with every variety of water play apparatus. Water slides, pools. Wave pools, water fountain pools, basketball hoop pools, pools for riding clear round tubes along circuitous currents. It's really a therapist's dream. I could see each and every one of you working your way through the park with your tiny charges. I can just imagine some of you working on forging the path for new language. "Water!" "Splash!" "I want." "Can I have a turn?" "What is your name? My name is..." And it's an occupational or physical therapist's dream really. A million opportunities for fine and gross motor work, and forget the obstacle course possibilities.

The last time we were here, we encouraged Declan to try out the medium-sized water slides, the kind you hop on without a tube and are short enough if you change your mind half way down. Tentative, he went for it anyway. He sat right down in the rushing water at the top of the slide and let 'er rip. Tova cheered him on at the bottom. I held my breath. Hope he likes it, because there's nothing I can do about it now. The smile at the end was all we needed to see to know that it would not be his last ride. "I want to go again!" "Okay!" I say, pointing him toward the stairs that lead back to the top. Flights of stairs are stacked on top of each other. They go in different directions and sport all kinds of water toys, squirt guns and buckets; but eventually, they lead back to the top of the slides. That is, if you don't go in the opposite direction across the one bridge that connects these stairs to another section of the park. Even so, getting to the slides seems intuitive. You can see where the slides are as you climb, so you can inch your way toward them despite the distractions on the way. But that time, years ago, Declan didn't and while I watched him the entire way from the bottom of the slide, the people crossing in front of him and the structure of the equipment eclipsed my view enough to lose sight of him. I started to chastise myself for letting this happen. How could I set him up like this? There's so much that is required to get to the slides. My mother's scan could not find him and I finally went to a lifeguard for help. Well equipped for this task, they put out an all-call for a little boy, six, in a blue and green bathing suit. Declan soon appeared with a lifeguard by his side, looking extra nervous. It was his first "Remember when I got lost?" scenario. I ached looking at his little face, brows working extra hard to hold back the tears. "It's okay boo-boo," I said hugging him, trying to convince myself too, "you were safe the whole time."

That was last time. This time, Declan was still very excited to return. The experience did not keep him from wanting more. In fact, we have come to refer to the place as GWL around him in order to avoid the rash of questions about the next time we could go. Pretty cool he still loved going there, right? In the past, when he was younger, it might have become another place we would have to avoid. Remember how tentative and reluctant he could be? Progress, people, progress! Well, this time, the first part of the park he approached was the lily pad pool. I watched as his friend Jasper crossed the series of leaf-shaped rafts toward the opposite side of the pool. A net made of rope hung above him, and he used it like a monkey bar as he hopped from one pad to the next. He had to work to keep his balance because the lilypads, each anchored to the bottom of the pool, were still very precarious and unpredictable. They tipped and turned each time his weight shifted. I worried how well Declan would be able to navigate this and whether he would become frustrated. Recently, when he struggled to climb a tree that his peer easily navigated, he got very angry and upset. I started to make a list in my head of the skills required: executive function (the ability to plan ahead and sequence the steps that need to be taken), motor planning (the brain's ability to tell the body what to do and with which parts), speech and language (the inner voice to coach oneself along), balance...then I just checked to make sure there was a soft cushion for any possible head injury. I know, have a little faith mom. But I am, after all, a mom. Jasper successfully made it to the other side and it was Declan's turn. He didn't hesitate at all and grabbed a piece of net. He took a step onto the first pad, and remained amazingly stable. Abs, I thought. Thank you physical therapists and hippotherapists! Then he grabbed the next piece of the net without hesitation. He knew what to do next, and the vestibular motions were tolerable. Thank you occupational and physical therapists! It was a long way to the other side, but he perservered, even enjoyed the new challenge. Thank you SEIT's! Finally, he made it all the way across without a fall. I waited for eye contact and threw my arms up in the air to congratulate him from afar. He came running around to where I was standing and said to me, partly astonished at his own accomplishment, "I'm so good at it!" Thank you speech therapists. Thank God for therapists.

03/19/2010

There's an elephant in the room. Our kids are going to school with multiple disabilities and can't access the curriculum. The help that they are getting is not adequate. Everyone knows. No one says it out loud. The number of children with disabilities is growing. The schools stall, the parents are sleepless with worry, and there is still no solution. When I'm awake at night I try to figure it out. Why would a school not do everything it takes to help a child to learn? Why would a professional, who set out to be in education for one reason only, so quickly abandon that reason? Sadly, I believe it comes down to what most things come down to: money and politics. Special education is a nuisance to a district that wants to build the number one high school in the country. It is costly. It brings down the school average. It lowers real estate values. But what is to be done for these kids? Many of their IQ's are normal, sometimes even above average. Often, their brains just cannot take the information in the same way as most children. There are brilliant educators out there who are mastering best practices for helping all kinds of minds to learn. But not all districts choose to take on these best practices. There is fear. There is speculation of cost and manpower without any evidence or real investigation. The resources are out there, the success stories are abundant. But it takes vision, hard work, courage, and a shifting of values. What exactly are the criteria for a top high school? For a top school district? What does it mean to be truly innovative and revolutionary? What value can an entire population of students, teachers, administrators and families gain by solving this real life equation? What impact can we have on the world? What exactly is the most important lesson to be learned?

03/09/2010

It looks like something out of Mummenshanz. It's like no other toy you have seen. It's a sleeper. Once kids get their hands on it, they go nuts. Here is what The Sensory Processing Disorder Resource Center has to say about it:

Body Sox (tm)... It may just be that only those in the "sensory integration
therapy world" know about the awesome benefits of these lycra sensory delights.

I must admit, they are pretty strange looking, but very therapeutic! However,
if you are new to these, or just want some additional ideas on how to use them
therapeutically, then keep reading!

The see-through lycra/spandex "body sock" (Body Sox tm) is a movement,
proprioceptive, tactile, and deep pressure experience like no other. Perhaps you
are wondering what to do with this "odd" looking thing. Oh, that's easy...just
climb in, zip it up, and watch your body make shapes you never thought possible
(among other uses which will are suggested below).

Because Body Sox (tm) are see-through (and breathable by the way), you can
have the child do several things. First, place the child in front of a
full-length mirror with the body sock on. Have them stretch it into as many
shapes as possible using every part of their body, and watch the silly looks
they can create. Have them hold each pose for 10 or 15 seconds to increase body
awareness, balance, and or proprioception.

Second, you can turn the lights off, shine a flashlight (or bigger light) on
them, and use the Body Sox (tm) to make crazy looking shadows on the wall. Just
as you would with your hands, challenge them to use their whole body to create
as many shadow animals, shapes, objects, or letters as possible (standing,
sitting, or laying down). It is a wonderful creative activity that also benefits
the sensory system and body awareness!

Here's another idea... have relay races with the kids in them, giving them
different directions on how to move (i.e. crawl, walk like a penguin, giant
steps, baby steps, slither like a snake, commando crawl, hop, jump, etc.).

Why on earth would they do these things, you ask? Most importantly, because
it's FUN! Second, because it sparks creativity and imagination. Third, because
it is quite therapeutic and it feels good.

Body Sox (tm) will help children with sensory processing disorders to work on
"position in space" skills. They must kinesthetically feel what their bodies are
doing and how they are coordinating their body movements. Watching themselves in
a mirror, or creating shadows, will help them develop t proprioceptive sense, which is often dysfunctional in children with sensory integration dysfuntion/sensory processing disorders.

The last critically therapeutic activity the "body sock" provides is heavy work/deep pressure input that is both calming and organizing. Through
all of these movement activities in the lycra "body sock", they will have
comfortable, resistive material to push against and have pushing against them.
This will benefit both children (or adults) with tactile defensiveness as well as the sensory seeking kids (you know
them...the movers, shakers, crashers, endless "energizer bunnies"!)

Declan and Tova received Body Sox as a gift 5 years ago from one of Declan's therapists. At 10 and 12, they still use them. In fact, when their cousins (3, 6, 12, and 14) came over for Thanksgiving last year, they liked them so much that we ended up giving one to each for the holidays. We have recently heard that they have begun to give Body Sox away as gifts themselves. It's cool. Trust me on this one.

03/05/2010

Tova's friend Anna was over for a playdate. The girls had successfully managed to have a large chunk of alone time before having to finally give in to Declan's requests to play something all together. "Let's play hide and seek!" Declan requested, not noticing the subtle cues that I could detect, that the girls were not thrilled at the prospect but were willing to play along. Remarkable, I thought to myself, how much they could express without saying a word, and how I could actually read multiple movements, gestures and expressions to come up with a complete understanding of how they were feeling in that one moment. "Who will be it?" Declan enthusiastically called out, blissfully ignorant to all of these subtleties. Who is better off, I thought again, the one who is highly aware of all of what everyone around them was thinking, or the one who doesn't notice them at all and remains present and content in their own reality?

Unable to wait for a response, Declan proclaimed that he, in fact, would be it, and sent the girls off to hide. He walked straight over to where I was sitting as a matter of habit. In the past, Tova would insist that I help Declan keep his eyes shut and count at a reasonable pace to avoid unintentional cheating. Declan always had a hard time resisting the impulse to lift his head, almost as if it was too disorienting to not have his bearings for so long. As he counted, I watched as Anna and Tova hid not 20 feet from where Declan and I sat, Tova choosing to hide behind the other side of the kitchen island, and Anna, comically sitting in full view in a chair in the corner of the room with only a plant hiding her face. I held in my laughter and silently smiled at the girls as they got ready for the reveal. Admittedly, I was not sure which way it would go; would their spots be so obvious that Declan would find them in mere seconds, or would they be enough of an obstacle to keep him searching? Declan continues to have many deficits, among which are visual discrimination, auditory processing, executive functioning, and taking on the perspective of others, all of which are required to succeed in this game. Not long ago, he astonished us all by choosing to hide in the all glass walk-in shower, as if the frame of the box he walked into would be enough to keep others from seeing him.

"Ready or not, here I come!" Declan declared, and started his search with a devilish smile. His movements from the start lacked a system. Most of our frontal lobes at the age of ten would know to start in one area, and move methodically around the room so as to cover every spot. Declan, in contrast, started in one direction, then darted to another with no rhyme or reason. It reminded me of the young students that I would work with who were just learning to count. The children who chose to start with the manipulatives at one end of a line and end at the other, or who chose to slide one manipulative over to a separate area, had systems that helped them to succeed. The children who had no system tended to recount some of the objects or miss others altogether.

Several minutes into the game, Declan walked past Anna into the kitchen, and by chance, found Tova behind the counter. He walked past Anna again to continue his search. At least ten minutes went by, with almost as many drive-by's, and Declan still failed to detect Anna despite the fact that her knees were out in plain sight and her elbows poked out as they held up the plant. At a certain point it just became fascinating. What is happening for him that he cannot see her? Anna's mom Nancy, who is also a parent of a child with special needs, suggested that we try to use the example to learn. "See if you can figure out where it breaks down for him," she suggested, "it might give you a clue into what is happening for him and ideas for working with him." We all watched as Declan moved directly toward Anna again, then walked away without any clue. Mercifully, Anna directed Declan toward her with sounds and movements, and Declan happily completed his his job as seeker, unaware of the experiment in which we had all begun to conspire.

Anna and Tova continued to play the game, experimenting with different ways to hide, to see how he would respond and what would get in the way of the task for him. One time, Anna put a bag over her head and drew a similar response. We discovered a few things: if Anna's face was showing, he was more likely to see her. If she was moving, he was more likely to see her. A small aside in my sick mind: if I don't move when he is trying to track me down to help him change the batteries in the TV remote, will he, like the Tyranosaurus Rex, fail to detect me? Since these instances, I have worked with my colleagues on something called Task Analysis, a term many in special education would readily recognize. Defined, it means just what Nancy was telling me: taking a task and breaking it down into small pieces to reveal exactly what is entailed to perform it.

Let's see. To be a seeker, one would need to (among many other things):

hide their eyes

count

listen for clues

have a system for searching

know what makes feasible hiding spaces

be able to detect just a part of someone's body or clothing

distinguish a person from the background

remember who the other players were and what they were wearing

remember previously used hiding places

knowing when they are running out of locations to search

have endurance...

Did you know there are therapeutic terms for many of these skills? For instance, being able to know a child is there just by seeing their foot is called visual closure; that is, the child can visualize the rest of the person just be seeing one part. It's a lot more complicated then we all realized, isn't it?